I recall seeing one of my mentors, medical sociologist and long-term advocate for nursing home reform, Charlene Harrington speak in Washington, DC. She said she had been advocating for nursing home reform for more than 20 years and that in those 20 years she had seen little positive change. The Affordable Care Act (ACA 2010) may well be the turning point that Dr. Harrington was looking for. From what I have learned of the ACA, this piece of legislation offers a first step towards real transformation of how we care for and support our parents and loved ones as they age. What the ACA does is facilitate the use of state and federal funding streams for home and community-based services and basic health care for all, both of which should have an important impact on how we age.

Here is what the Affordable Care Act has to offer: First, there is a much greater emphasis and facilitation for states to support home care and community-based living for people as they age. The Community Living Assistance Services and Supports (CLASS) Program establishes a new public long-term care insurance program geared towards funding home- and community-based supports. Once someone has paid into the program for a minimum of five years, they will be eligible to receive an average of $50-75 per day to help them pay for home or community based care. Section 2401, the Community First Choice Option, allows states more freedom to provide attendant care and increases the Federal coverage for these services. Section 2402 offers a number of ways to reduce barriers and facilitate access to a wide array of home- and community-based services through the existing Medicaid HCBS waiver programs. Section 2403 extends until 2016 what has been a successful demonstration project started under President Bush, Money Follows The Person. These grants allows states to develop projects that allow people to choose where they want to live, giving people with care needs the option to live at home or in the community as opposed to in a nursing home. Section 10202, the Balancing Incentives Program, also helps states have better flexibility to spend their money on non-institutional services.

Second, there appears to be some steps for reforming institutional care. Section 2701 includes the development of adult health quality measures and Section 2703, Health Homes for Individuals with Chronic Conditions, appears to be a measure to reformulate how institutional care is delivered for persons with a focus on “person-centered” care.

Successful long term care is so much more than the latest medical breakthroughs and treatments. It is about providing families with the supports they need to care for their loved ones and when family are not able to do that it is about stepping in to serve that function in the most humane and life-affirming way possible. Universal access to health and social supports is critical for transforming long term care in the U.S.. American families are carrying too much of the burden and while gaps are sometimes filled locally by community- and faith-based organizations and in part by national programs of Medicare and Medicaid, this is not enough.

Fixing this system does not necessarily mean spending more money on increasingly costly medical technologies, pharmaceuticals, or the latest medical advancements. It means spending wisely on home care, nursing and personal care, respite for families, and coordination of care, such as case management. It means doing further research on innovative and cost-effective solutions at the end of life, shifting the focus of federal dollars from nursing home to home- and community-based care where relationships can continue to keep people connected to life. It means looking into new ways to deliver nursing home and hospital care for those who do need that level of care. It means tapping into local resources (community- and faith-based initiatives) that have come to find cost effective and humane, care-based programs for persons who are elderly, disabled or dying. I believe the Affordable Care Act (2010) is that step in the right direction that we have all been waiting for.

Recent passage of the Senate healthcare bill has secured healthcare reform for our country, however, some critical elements have been sacrificed in the process. These include the public option, funding for advanced care planning, and a comprehensive and thorough overhaul of long term care. As many people on both sides of the debate are aware, health care in this country cannot truly be reformed until the ‘elephant in the room’ has been addressed and in this country that issue is long term and end-of-life care.

The costs of long term and end-of-life care are high, with more than one-fourth of Medicare spending going to cover healthcare for the last year of a patient’s life and more than two-thirds of the Medicaid budget going to cover nursing home care for persons who are aged and disabled. Without a public option to control costs or advanced care planning to help people manage decision-making that is sorely needed at the end of life, is meaningful reform really possible?

One country which offers some clues for U.S. reform efforts, particularly in the area of long-term and end-of-life care, is The Netherlands, which employs one of the more successful and long time models of public-managed, privately-run health care. According to the 2008 annual Euro Health Consumer Index, The Netherlands was ranked the best healthcare system in Europe.

Dutch healthcare is based on a cooperative government-private industry partnership, where the government monitors access and quality of healthcare, while leaving private industry to deliver health care. Just as most of the current U.S. healthcare reform bills are proposing, health insurance companies in The Netherlands are legally obliged to provide a basic package of services at a flat rate to anyone who applies, regardless of previous condition. The Dutch system makes a distinction between normal medical costs and high, long-term medical costs, covering these ‘exceptional’ costs through government funding. The General Law for Extraordinary Medical Costs (AWBZ) is available to everyone to cover long term costs of nursing home care, some home care, and medical equipment. It is funded through a payroll tax on all workers.

One of the most important differences in the end-of-life care systems in The Netherlands and the U.S. is the proliferation of home care options in The Netherlands. The Dutch national homecare service provides nursing and personal care services in the home up to four times per day and includes assistance with personal care, meals, medications, nursing care, and overnight respite (in which a nursing assistant spends the night to care for the patient as needed and to give the family time to sleep).

Compared to the current U.S. situation, in The Netherlands many more elderly are able to live at home with home care supports and fewer live and die in institutional settings. In 2003, approximately one third of all persons who died in The Netherlands that year died in the hospital; more than one-quarter died at home and one-fifth died in either a residential/nursing, elder care or acute care nursing facility. By contrast, in 2001 in the U.S., 57% of Americans died in hospitals, 20% died at home, and 17% died in nursing homes.

Where The Netherlands has been able to control costs through public option or a pooling of risks, the U.S. system is dominated by fragmentation and de-centralization. Most providers in the U.S. operate independently with no one in charge of coordinating care or finding ways to improve care across providers. Medicare generally covers the first 100 days of skilled nursing, rehabilitation, limited prescription costs, and hospice care once a patient qualifies. Long term care is largely provided by Medicaid, covering the cost of nursing home care, but only for Americans who drop below a certain income level. The result – long term and end-of-life care is often overlooked and patients are left to deal with costs for end-of-life care for which there are little or no safety nets.

According to the American Association for Retired Persons (AARP), the bulk of long-term care in this country is provided by family and friends and the bulk of long-term care is paid for by personal savings accounts. One study estimates that as much as one-third of families of patients hospitalized with serious illness lost most or all of their personal savings as a result of costs not paid for by other sources.

Threat of malpractice and an incentive system that encourages overtreatment by specialists have led to a system predicated on extending life at all cost – even when none of the participants (hospital staff, patients or families) view that as the best choice. Advanced care planning and directives could ameliorate some of these issues, however, health care reform proponents abandoned support for counseling for end-of-life in the face of accusations that such counseling was equivalent to government “death panels.”

In voting yes to the current bill, Senator Jay Rockefeller, Chairman of the Senate Finance Subcommittee on Health Care noted: “This yes vote is not an endorsement of this bill as it stands today. My vote is a pledge to continue on the Senate Floor and in Conference the fight for policies that work.” Among the areas of concern that he noted missing in the current bill are a viable public health insurance option, regulation for the insurance industry, protecting and improving Medicaid, stronger affordability protections, improving health care information technology, and addressing end-of-life care.

Any healthcare reform effort that doesn’t address these items will ultimately fail to curb costs. And until all parties are willing to address the elephant in the room – the rising cost of long term and end-of-life care – true healthcare reform will continue to be out of reach.

With the election of President Obama, health care reform is back on the agenda in Washington, DC. It’s been an exciting time as the President, Congress, researchers, pundits and advocates weigh in on what it sure to be a turning point for health care in our country. Critical to health care reform is figuring out what to do with some of the costliest stages in health care – long term and end-of-life care. While there is little in the new plans that specifically address probably one of the biggest problem areas in health care today, I believe that several key elements of the current plans will take us an important step forward towards reforming long term and end-of-life care in this country.

The Netherlands is probably best known for its somewhat controversial social experiments with legalization of prostitution, soft drugs, and euthanasia. What many do not know, however, is that The Netherlands has one of better systems of home-based and long term care. Between 1999 and 2008, I conducted ethnographic research on home care in The Netherlands, conducting observations and interviews with the national homecare agency, Thuiszorg; with general practitioners in their office and on home visits; and with end-of-life patients and their families. In 2008, I returned to The Netherlands to conduct follow-up interviews with physicians and researchers regarding recently enacted health care reforms (Norwood 2006; Norwood 2007; Norwood 2009).

This report will cover two things. First, it will use ethnographic data gathered from a 15-month ethnographic study of home death in The Netherlands to talk about how one country delivers humane and cost-effective long term and end-of-life care. Second, it will discuss elements of current U.S. health care reform plans in relation to the Dutch system of healthcare in order to highlight how the U.S. might be able to make improvements to long term and end-of-life care in this country. This report considers the possibility of de-institutionalizing elder care in the U.S. based on a Dutch model with the aim to add to the public debate a focus on reforming long term and EOL care that may be critical for successful health care reform in this country.

Home-Based Care in The Netherlands: An Excerpt

We begin with an excerpt from one morning spent with a nurse from Thuiszorg, the Amsterdam branch of the national home care agency in The Netherlands.

I bike across town through the streets of Amsterdam to meet Jan. It’s 8 o’clock in the morning, my first day with Amsterdam Thuiszorg. Jan is a home care nurse on a team that cares for some of the more complex cases of home care. He’s been with Thuiszorg nine years, first as a nurse’s assistant and now as a nurse. Our day begins with a team meeting to discuss the patient roster and to coordinate who is doing what. Today, the meeting includes a care manager; a nursing home physician; my escort for the day, Jan, two licensed practical nurses (LPNs) and three nursing assistants.

9.30 AM We grab our bicycles and head several blocks over for our first home visit with Ms. Stam, a woman in her 70s whose brain stem has atrophied. She uses a catheter and feeding tube, and has requested no use of pain killers. Her son was an addict who died and she is scared to take too much medicine. I ask if she is in much pain and Jan says she is. She also had a euthanasia request, but cancelled it because she decided she didn’t want Thuiszorg employees to have to go through that. She thought it was too heavy a burden. She’s been with Thuiszorg for about two years, at first just receiving house cleaning. Now she gets nursing care 2-3 times a day; help with daily care 3 times a day; house cleaning and an errand service once a week. Currently, she does not yet need overnight service.

Jan lets himself in with a key and finds Ms. Stam in her bed on the first floor. He changes her urine bag and sets up her feeding tube. Her house is a little messy by Dutch standards and smells a bit. She’s lying in bed smoking and I talk to her some while Jan is in the kitchen. She tells me about her dead son and shows me his picture. I say he’s very handsome and ask what he did. He was addicted to drugs and died of AIDS two years ago is her answer. Her husband is also dead. She keeps scratching while she talks, telling me “the itching is terrible.” Jan has her medicine prepared and he tells me how difficult that is to coordinate, to make sure someone doesn’t make a mistake. Home medication in general is difficult to manage, so Thuiszorg is working on this now trying to come up with a better system. Jan gives her medication and sets up coffee for her before he goes.

Eleven o’clock and the visit is done. On the way out, I ask if Thuiszorg is like family for her? No, she’s formal with Jan, not like family. Jan and I swing by the pharmacy on the way to the next home visit, but it is too crowded so he says he’ll do it later. (He’s checking on a prescription for one of his clients).

We arrive at the next house to find Ms. Decker, a woman in her 70s who has been pulling off her bandages covering a pressure sore on her hip. It is causing her to bleed. She knows she shouldn’t pull the bandage off, but it was dirty, she tells us, and wet from her last shower. She promises she won’t do it again. Jan wants to redress her sore and re-wrap her leg, which is swollen from an injury, so Jan takes off her bandages and has me help him get her into the shower. She is concerned about being clean and mentions it several times during our visit. After her shower, Jan redresses the bandages on her pressure sore and on her leg.

By 12:30, we are on our way weaving through the streets of Amsterdam to our next home visit. This visit is with a man and wife, Mr. and Mrs. Veenhuis, both in their 90s. Mr. Veenhuis has been a Thuiszorg client for 15 years. We arrive and a younger woman smoking outside lets us in. Mr. and Mrs. Veenhuis have visitors today. They are all seated around a table that overlooks the large picture window to the street. Mr. Veenhuis is in a wheelchair and someone tells me he’s going to be 92 tomorrow. Jan is here to change his pressure sore bandages and gives him painkiller to drink to lessen the sting. He doesn’t want to drink, but Jan reminds him how painful it is without it. He sips on it and Jan starts to peel the bandages and I see what I think is skin with hair coming off on the bandage. Mr. Veenhuis cries out, “ow, ow, ow” and “doe het niet meer (don’t do it anymore).” Jan and the woman who let us in remind him to drink the pain killer and he tries to drink a little more. The radio is on and Mrs. Veenhuis is swaying her head side to side to the music. The younger woman is catching her up on the latest gossip and I hear her call someone a “trut (a bitch).” Another woman drops by and I am again introduced as the American. Mr. Veenhuis is saying “ow, ow,” when he’s not trying to drink more of the pain killer. Jan is now measuring the size of the pressure sores and has me write down the dimensions: one long sore on his leg and two on one ankle. The other ankle is wrapped to prevent one starting there. The pressure sores have gotten bigger and seem to be a result of sitting in the wheelchair. Someone tells me they are having a party tomorrow for his birthday. Mrs. Veenhuis has fluid build up on both legs and once he’s done with Mr. Veenhuis, Jan checks her out, too. We leave them seated around the picture window, conversation and music blaring. It is 2 o’clock and we head back to Thuiszorg for lunch.

The Dutch Healthcare System

This excerpt raises two important points. First, this excerpt (typical of how home care is delivered in The Netherlands), hints to the prevalence of homecare there, demonstrating the extent of what they can provide to home-based clients – many of whom had fairly complex conditions. Second, this excerpt demonstrates how homecare can be used to support the maintenance of social connections and social life as people age and live with chronic illness. As anthropologists, we are aware of the power of social bonds and in this paper, we hope to highlight for policy makers the importance of health care that supports and maintains sociality for patients and families, especially in long term care and care at the end of life.

But first, to better understand this excerpt of home care in The Netherlands, it is important to have a sense of how healthcare in The Netherlands is delivered. In The Netherlands, nearly 100 percent of the population receives basic health care, and yet the Dutch spend considerably less for health care than we do in the U.S. In 2003, for example, the Netherlands spent 9.8% of its gross domestic product on health care, below the spending levels in Germany (11.1%), France (10.1%), and Canada (9.9%) and more than one-third less than the United States (15.0%) (Grol 2006). Compared to 30 other industrial nations, the U.S. has consistently spent the most on healthcare, while at the same time remaining the only industrial nation not to offer universal health coverage for its citizens. According to the latest figures, 46.6 million people in the U.S. (15.9% of the population) remain uninsured (OECD 2006; U.S. Census 2006; WHO 2007).

Dutch healthcare is based on a cooperative government-private industry partnership, where the government monitors access and quality of healthcare, while leaving private industry to deliver health care. Dutch healthcare offers universal coverage. Prior to January 1, 2006, the Dutch insurance system consisted of public and private sector funding streams with a strong focus on primary care. Public funds consisted of premiums taken directly through employers and income taxes. This is similar to what has been talked about as a “public option” here. On January 1, 2006, the Dutch passed healthcare reform changing to a single, compulsory system of national health care insurance for all. This new system equalizes risk.

Prior to January 1, 2006, the Dutch insurance system consisted of public and private sector funding streams with a strong focus on primary care. Anyone below a certain salary (€31,750 gross per year in 2003) was covered by Ziekenfonds, the government-subsidized, but privately managed insurance system, which covered approximately two-thirds of the population. On January 1, 2006, the Dutch passed healthcare reform changing to a single, compulsory system of national health care insurance for all. It is a new system of ‘managed competition,’ which keeps general practitioners as the gatekeepers, but allows consumers freedom to change their insurer and insurance plan. The new payment system for general practitioners includes annual capitation payments per patient and a fee per consult (both available under the former system), plus reimbursement for costs related to type of service rendered, staff employed, and quality and efficiency indicators (Griffiths, et al. 2008:15-23; Grol 2006; Weel 2004).

Health insurance companies are legally obliged to provide a basic package of services at a flat rate to anyone who applies, regardless of previous condition. Basic packages include medical care (including visits to general practitioners, hospitals, medical specialists and obstetricians), hospital stays, dental care (through age 18 and after age 18 only for specialist dental care and false teeth), medical appliances, pharmaceuticals, prenatal care, patient transport (ambulance), and paramedical care. Those who apply for additional health insurance over and above the basic package are subject to review by the health insurance company who then has the right to both set prices and reject applicants for additional insurance coverage. Fees for the basic health insurance package most recently averaged €95 per month, with some variation between competing insurers, and premiums for children under age 18 are free (JustLanded.com n.d.).

In addition to health insurance, there are a number of social safety nets that have an important impact on health and well-being in The Netherlands. The Dutch unemployment benefit system covers those who are eligible at 70 percent of former wages for up to six months. The Sickness Benefit pays 100 percent of an employee’s wages for the first six weeks of illness that results in an inability to work and up to 70 percent for the remaining 52 weeks that an employee might be out of work. According to the Disablement Benefits Act (WAO), after the first year if someone is still not able to return to work sick employees can receive up to 70 percent of their former income. There are also provisions for employed workers to take what is called ‘care leave’ to care for sick family members (de Vries 1998:206-210; Griffiths, et al. 2008:15-23; Palriwala 2001).

The Netherlands is the country with the longest standing legal practice of euthanasia and it was the first country to legalize euthanasia (killing a person at that person’s explicit request typically for reasons of incurable illness) and physician-assisted suicide (providing a person with the means to kill themselves typically for reasons of incurable illness) by court decision in 1984 and by law in 2001. What is probably less known is how euthanasia is integrated into a larger system of end-of-life care in The Netherlands.

Euthanasia occurs only rarely in a country that has extensive supports for home and long term care (Norwood 2006; Norwood 2007; Norwood 2009). In 2005, for example, euthanasia and assisted suicide made up 1.8 percent of all deaths, down from 2.8 percent in 2001. Euthanasia is often talked about, however. In 2001, for example, approximately 34,700 requests for euthanasia were initiated with Dutch physicians, yet only 3,931 (2.8 percent of all deaths total) could be attributed to either euthanasia or assisted suicide. Of those who initiated a request for euthanasia with their physician (which includes those who initiated requests in the event of a future serious illness), only 1 in 10 died a euthanasia death and two-fifths of those who made “concrete” requests (requests typically made after serious illness was diagnosed) died by euthanasia or assisted suicide. By 2005, less than 1 in 10 who initiated requests and only one-third who made concrete requests died by euthanasia or assisted suicide (Wal, et al. 2003:46).

What are Dutch people talking about when they discuss euthanasia at the end of life? My research suggests that euthanasia talk in addition to being a discussion for planning euthanasia death, in many ways also serves a palliative function at the end of Dutch life. By creating space to talk about what people want at the end of life, the Dutch have found a mechanism within healthcare that provides participants with a venue for processing meaning, giving voice to suffering, and reaffirming social bonds and self-identity at the end of Dutch life. Through the mainstream practice of euthanasia talk, space has been created within healthcare which helps people live longer as active participants engaged in Dutch social networks at the end of life (Norwood 2009).

Long Term and Home-Based Care

The Dutch system makes a distinction between normal medical costs and high, long-term medical costs, covering these ‘exceptional’ costs through government funding. The General Law for Extraordinary Medical Costs (AWBZ) is available to everyone to cover long term costs of nursing home care, some home care, and medical equipment. It is funded through a payroll tax on all workers (Hohman 2007). Home care options in The Netherlands are extensive and it is extraordinary the level of home-care available to help keep Dutch people in their homes as they age and their health declines. Like our ethnographic excerpt that opens this section demonstrates, the national homecare service, Thuiszorg, provides nursing and personal care services in the home up to four times per day and includes assistance with personal care, meals, medications, nursing care, and overnight respite (in which a nursing assistant spends the night to care for the patient as needed and to give the family time to sleep).

A typical day spent with Thuiszorg employees have them letting themselves into the home if the patient is unable to do that for him or herself, administering medications, setting out each meal and cleaning up from meals, dressing wounds and running small errands for patients. In addition, there are services that deliver home-cooked meals and come by regularly to clean the house. There are waitlists for these services, but according to my research all patients who needed home services at the end of life were moved up on waitlists when need prevailed. Even patients who are no longer able to get out of bed, are fully incontinent, or require daily nursing care were able to stay home with the assistance of Thuiszorg.

The Dutch healthcare system is managed and its costs contained in part via general practice, the gatekeepers of Dutch healthcare. Dutch general practice, however, is quite unique for at least two reasons. First, Dutch general practice is based on dialogue with the patient and family members. In a typical office visit, for example, the visit begins in the spreekkamer (or consultation room) seated across from or cattycorner to the huisarts. The huisarts dresses in regular street clothes, no stethoscope around the neck nor white lab coat to distinguish roles. Most of the visit occurs seated around the physician’s desk discussing the problem, which includes, for example, discussion about stress on the job or problems in the marriage. Examination of the body always occurs second, and sometimes not at all, in the onderzoekskamer (or examination room). On average, study huisartsen used the examination room in less than half (5 of 11) of all visits and the average length of a morning office visit was 12½ minutes, time usually spent in discussion. Afternoon visits were often for scheduling more complex, or psychosocial health problems. The length of afternoon visits varied more, many visits going as long as 20 to 30 minutes and longer and, like the morning visits, afternoon visits were typically based in discussion (Norwood 2009:130-131).

Second, Dutch general practice is unique because of their on-going tradition maintaining home-based medicine. Dutch general practitioners conduct house calls generally before lunch and at the end of every afternoon. On the average, study huisartsen saw approximately 28 patients a day, which included up to seven house calls to homes and nursing homes (Norwood 2009:131). Every huisarts in this study conducted house calls.

Dutch Nursing Homes

If someone requires more than Thuiszorg and family members can provide in the home, then the choice must be made to move to one of several types of long-term or acute care facilities for which there are also waitlists. Many end-of-life patients spend time in and out of the hospital (ziekenhuis). For those with minimal needs, there are independent living apartments (aanleunwoning) where residents have access to nursing and personal care services but have their own apartment with a kitchen and where they can live with a partner or alone. There are residential or nursing homes (verzorgingshuizen) and elder care homes (bejaardenhuizen), where residents have rooms, typically without kitchens that are situated off a hallway staffed by nurses and nurse assistants.

If 24-hour care is needed, there is the acute care nursing facility (verpleeghuis) or in a few places, like Amsterdam, hospice is available to those who are at the end of life. Verpleeghuizen will have any number of units, some devoted to persons living with dementia and some for palliative care at the end of life. Compared to the U.S. and most notably Britain, hospice is not prominent in The Netherlands. Instead, it appears that where hospice was added to supplement palliative care services in end of life care in the U.S. and elsewhere, these same services were largely not missing in the current Dutch health care system, where families are given quite a bit of support to die at home and general practitioners are much more involved than many of their U.S. counterparts in providing palliative care at the end of life. In 2003, approximately one third of all persons who died in The Netherlands that year died in the hospital; more than one-quarter died at home and one-fifth died in either a residential/nursing, elder care or acute care nursing facility (verzorgingshuis, bejaardenhuis, or verpleeghuis). The remaining died in other locations (CBS 2004). In contrast, 57% of Americans die in hospitals, 20% died at home, and 17% in nursing homes (Brumley 2002).

In 2006, approximately 72.2 percent of the cost of health care in The Netherlands was covered by social health insurance, 8 percent was paid for by patients, 6.8 percent by private insurance, and an additional 13 percent by government and other unspecified sources. Social health insurance also covered approximately 66.8 percent of welfare costs (including extraordinary medical costs for persons who are elderly or disabled), 11.8 were paid for by patients, and 21.4 were covered by government and other unspecified sources. Employees contribute approximately 5.4 percent of their incomes to fund this program (CBS 2007:99-100).

The American System of Healthcare

Compare this to the current system of healthcare in the U.S. and you will find some stark contrasts. Currently, our system of healthcare is largely a private system with a patchwork of limited government support for long term care. The cost burden of U.S. healthcare falls largely to private business and individual citizens compared to other nations. Only 45.8 percent of the total expenditure on healthcare is covered directly by the U.S. government, compared to, for example, 81.2 percent coverage in The Netherlands, 87.4 percent in the UK, and 70.4 percent in Canada, all countries that have universal health coverage (WHO 2008).

Where The Netherlands has been able to control costs through public option or a pooling of risks, the U.S. system is dominated by fragmentation and de-centralization. Most providers in the U.S. operate independently with no one in charge of coordinating care or finding ways to improve care across the silos of providers. Government assistance is also fragmented. Medicare is a federal health insurance program that covers anyone 65 or older and pays for only skilled nursing facility care for the first 100 days following a hospitalization. Medicaid is a joint federal-state program for persons who are low-income or disabled, and predominantly covers nursing home care. There are also Medicaid waiver programs that provide limited services in the home or community. Social Security Insurance provides monthly income disbursements for those with limited incomes, retired or persons with disabilities (Gleckman 2009).

Among the multiple private insurers, nearly all have overlapping networks of doctors, hospitals and other providers. The exceptions are staff or group model HMOs like Kaiser Permanente based in California. Also uncommon are large groups of physicians are large groups of providers such as the Mayo Clinic which have centralized budgets for health care services. Most providers in the U.S. operate independently with no one in charge of coordinating care or finding ways to improve care across the silos of providers.

It should come as no surprise that aggressive testing and treatment dominates the U.S. health care services. Patients nearing the end of life often have very different feelings about their kind of care they want yet the process of delivering medical care doesn’t take account of that nor even enable patients to adjust their care as their condition changes (Kessler, et al. 2009). As a result, more than one-fourth of Medicare spending goes to the last year of a patient’s life (Hogan et al. 2001).

Even with Social Security Insurance, Medicare, and Medicaid, there are costs at the end of life for which there are no safety nets (Gleckman 2009). Medicare generally covers the first 100 days of skilled nursing and rehabilitation services and for hospice once a patient qualifies. Medicaid is only available to Americans who drop below a certain income level, which means that for many elderly Americans they will need to pay for their own care at home or in the nursing home until they die or until such time that their assets and personal savings are depleted. According to the American Association for Retired Persons (AARP), the bulk of long-term care in this country is provided by family and friends and the bulk of long-term care is paid for by personal savings accounts. One study estimates that as much as one-third of families of patients hospitalized with serious illness lost most or all of their personal savings as a result of costs not paid for by other sources (AARP n.d.; Covinsky, et al. 1994). This is something that does not occur in The Netherlands. Voluntary and faith-based organizations in the U.S. fill in some of the gaps. Local organizations will offer some services to the elderly, the poor, and the chronically ill and disabled and hospice provides limited services on a sliding scale fee (or free of charge) to those with a terminal prognosis and an estimated six months or less left to live.

According to medical anthropologist Sharon Kaufman (2005), the tendency of American medicine is to attempt to stave off death with the most sophisticated (and expensive) treatments and technologies. Kaufman states that as many as one-quarter of all hospitalized patients are treated in an intensive care unit of a hospital before they die and when they enter the hospital system they enter a system that due to a complex set of circumstances – including incentives for overtreatment by specialists and the ever prevalent threat of legal action against healthcare practitioners in the U.S. – pushes life-saving treatments even when none of the participants (hospital staff, patients or families) view that as the best choice. The result is a way of dying that alienates all involved and as Kaufman describes is anything but humane or dignified (Kaufman 2005).

Palliative and hospice care is on the rise in the U.S. and is beginning to offer some real alternatives to death in the hospital. Palliative care units that focus on offering comfort and care to both patients and families at the very end of life are being added to hospitals across the country. In 1982, Medicare changed its benefits to include coverage for hospice, which provides home-based nursing, nursing assistance, and limited respite for families caring for loved ones dying at home. Hospice can come into your home to offer limited services and also operates a number of facilities across the country where persons who need 24-hour care can go to die. The National Hospice and Palliative Care Organization estimates that the number of hospice patients nearly tripled between 1997 and 2006. In 2006, 1.3 million persons received hospice services and approximately 36 percent of all deaths in the U.S. that year were under the care of hospice (NHPCO 2007).

While most continue to die in the hospital, prior to death the majority of Americans live at home or in community-based settings with the help of friends and family, and occasionally home health services. Between 1992 and 1996, use of home health services rose, but in the wake of Medicare cutbacks, was on the decline again by the year 2000 (He, et al. 2005:66-7). In 2002, nearly 1.5 million Americans lived in nursing homes and the large majority of these residents were 85 or older (NCHS 2004). Nursing homes in the United States, however, are not created equal. Many nursing homes (typically those that accept Medicaid patients) are not places you would want to be. Too often these places have the feel of a hospital, with white walls and easy to clean linoleum flooring. Residents may decorate their rooms a bit, but they do not typically bring in their own furniture and whatever efforts they do make do not seem to cut through the institutional feel. A walk through a typical American nursing home often reveals residents parked slumped over in their wheelchairs in the hallway or staring at the ceiling or the television in their rooms. If, however, you can afford to pay for long-term care, the level of care and the atmosphere of the nursing home improve substantially. Assisted living is another, more recent option for persons who are elderly, require a minimum level of care, and can afford to pay for it (SAL 2001). U.S. nursing homes and assisted living facilities that accept only private money (no Medicaid patients) are most like the majority of nursing home care that is available to all Dutch people.

Health Care Reform for Long Term and End-of-Life Care

Health care reform has been a big topic this summer with many different plans and plan elements discussed. Out of three keys bills – one in the House of Representatives (H.R. 3200) – and two drafts from the Senate – on Health, Education, Labor, and Pensions and on Finance, a common framework for reform has emerged, endorsed by President Obama. The primary focus of these bills is not long-term and end-of-life care but they will have an impact on these issues nonetheless.

The Netherlands

Current US

Health care

House and Senate bills (Sep 2009)

Compulsory coverage for all citizens

X

X

Government oversight, private healthcare delivery

X

X

X

Employer payments for health care required

X

X

Strong primary care focus, GPs as gatekeepers

X

Advance care planning

–in the House bill

X

X-

Electronic health information technology system

X

X

Essential healthcare benefits/Basic health coverage

X

X

Coverage for long term care

X

Guaranteed eligibility for basic care

X

X

Affordable premiums, co-pays and deductibles

X

X

Portability and choice of coverage

X

X

Social welfare safety nets

X

X-

X-

Under the plan that President Obama wants Congress to enact, all Americans would be required to have health care coverage just as the Dutch did back in 1941. Individuals without insurance and employees of small business would be able to choose their own health plan through a newly created health insurance exchange and receive financial assistance if they could afford to pay for coverage on their own. Private insurance companies would be required to accept all applicants without regard to pre-existing health conditions. They would be subject to risk adjustment (insurers with average higher risk group of members compensate insurers with an average lower risk group). This approach is again very similar the reformed Dutch system.

These reforms in the U.S. would go a long way to preventing life-threatening diseases and complications, preventing hospitals from being the first line of care for those who cannot afford care, stop those without money from having only the emergency room as their only guaranteed source of care; and shift some of the costs for long term and end-of-life care. Required coverage will take some of the burden off Medicaid and Medicare over the long term, catching things earlier and providing another option.

In combination with legislation enacted earlier in the year to provide funding and standards for electronic health records, reform would give many and eventually most patients access to general practice that would improve coordination of care, so that people formally without access to affordable care are now better integrated into preventative programs.

Advance care planning (in Section 1233 of House Bill 3200) would provide key payments to physicians, hospice providers, and others to improve the ability for patients to make choices about their care that the medical profession will follow. This proposal, however, has sparked controversy with opponents of reforms mistakenly labeling such assistance as ‘death panels.’

Recommendations for Reforming Long Term and End-of-Life Health Care in the U.S.

This report is titled, “De-institutionalizing Elder Care,” because of the striking similarities between the former institutionalization of persons with disabilities and the current system that favors institutionalization of persons who are elderly in this country. The treatment of persons with disabilities came under public scrutiny in the 1960s, ‘70s and ‘80s. With a focus on the conditions of institutional housing for person with severe disabilities and particularly persons with mental illness, the de-institutionalization movement emerged sparked by increasing outcries for equal treatment from persons with disabilities and their families and sparked by legislation and court ruling, including the Community Mental Health Act of 1963, the Americans with Disabilities Act of 1990, and in 1999 Supreme Court ruling in Olmstead v. L.C. While de-institutionalization for persons with disabilities has been in no way perfect, it has allowed many persons with disabilities the opportunity to live, to go to school and (with some major exceptions) work alongside the able-bodied at home and in the community (Shapiro 1994:240-241).

According to a report by the Kaiser Family Foundation, there are lessons that we can take from this time in disability history and apply to our current system of long term care. Lessons include an emphasis on quality of life and the right people have to make their own choices. According to Kaiser Family Foundation, long term care in this country should be better coordinated, working towards the goal of providing services and supports that promote quality of life. Furthermore, de-institutionalization is not enough. You must have the coordinated supports within the community to support life at home and in the community, family must be addressed and the politics of the current workforce and funding streams that favor institutionalization must be addressed (Koyangi 2007).

What we are suggesting today is that just as persons with severe cognitive and mental health disabilities, persons who are aging in this country need not live and die in institutions. Our parents do not want to live in nursing homes and they do not want to die in hospitals, so why can’t we follow the example of de-institutionalization, particularly for those whose services would be less costly and provide much greater quality of life in a home or community-based setting?

A shift towards de-institutionalizing elder care will require the following measures:

A shift towards better coordinated, cost-effective home-based care and community supports backed by federal and state funding streams.

Home and community-based care will allow persons on-going access to their regular social networks, giving them added tools for negotiating long term and end-of-life care.

Changes to nursing home and acute care at the end of life that will support the wishes of most patients to die with minimal medical intervention at home if possible.

Assisted living (e.g., Sunrise Assisted Living, Inc.) is a good model for nursing home care reform where persons are given the choice of what and when to eat, are given private rooms, and some flexibility and real choices for how they spend their time in institutional care.

Support for families who provide long term care through respite care and financial assistance similar to the dependent care tax deduction for children.

Given how much families in the U.S. assume the burden of long term care, they should receive more support through home-based care, respite, and leave packages that address wages lost by family members providing care.

A broad-based strategy through widespread coverage or a comprehensive safety net for extraordinary long-term costs that the elderly commonly face.

Long term care is not sufficiently addressed in any major health care bill being considered today by Congress. Therefore, once health care reform is passed, long term care will still need be a matter for public concern.

Better advanced care planning.

Move away from futile treatment at EOL and empower patients to make their own choices about how they approach health care and their lives in general when death is a strong possibility. Patients should have these choices regardless of whether it leads to more or less care. They and their families need someone –doctor, nurse or another trained professional – to talk through options, needs, concerns, desires, and choices. Codes encoded in orders for medical professionals to follow need to be an on-going dialogue not a one-time document. Doctors must re-initiate dialogue about what a person wants to take burden and guilt off family.

Expand prognosis for inclusion in hospice services.

Successful hospice services need to not be limited to the last 3 or 6 months of life. Either through hospice or traditional care from doctors, patients need someone to step up and offer more of the kinds of services that hospice offers to all patients living with chronic conditions and decline

This blog was prepared or accomplished by Frances Norwood in her personal capacity. The opinions expressed in this blog are the author's own and do not reflect the view of the Centers for Medicare & Medicaid Services, the Department of Health and Human Services, or the United States government.